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Thursday, January 17, 2013

LEARNING TO BREATHE

This past week there has been a weight on my chest making it
difficult…almost impossible to breathe. I felt exactly where I was a few months
ago: ravenously hungry, sore all over, paralyzed, OUT OF CONTROL. I started
asking myself, “How did I get back here? I’ve taken steps to get help. I am
openly accepting help from others for the first time in my life. I feel like I’ve
been moving in the right direction to manage my life, and yet I find myself
back to square one.” Yet today, somehow, my head feels clearer again, enabling
me to finish this post that I started months ago.

When people hear about what we’re dealing with, they often
ask me, “How do you do it?” To be honest, I don’t want to do it and I don’t
know how I do it. Most days I feel like I’m not doing it. A couple weeks ago
Nami spit out some of his anti-epileptic meds at me. I had no idea how much he
spit out and because he’s at the max dose I didn’t dare try to guess how much
more to give him. It ended up being a very bad seizure day with a seizure every
few minutes. Many of his seizures lasted a couple minutes and were on the scary
side. As the day went on, he became very cold. His lips were purple and his
hands and feet like icicles. There was nothing I could do to warm him up. When
I asked our pediatrician (my dad) about it, he said that seizures could cause
Nami to be this cold. I couldn’t believe that all this happened from just
missing part of one dose of medicine. Even though on Nami’s best days he still
has about 20-40 seizures, this experience made me realize how much worse off he
would be without all the medication. It also made me desire brain surgery for
him even more.

The journey down the road to possible brain surgery started
in September when many of Nami’s doctors gathered for a conference with me to
discuss Nami’s care. It was overwhelming to be there, talking with each doctor
and trying to figure out the care Nami needed for each affected organ. While discussing
his brain, we talked about the option for brain surgery in more depth than ever
before. As we talked I felt for the first time that this may be the route we could go.

Starting to seriously consider brain surgery for our son introduced
me to panic attacks. It was a Sunday night in October, before Nami went in for
his first hospital stay for testing (a 72 hour video EEG), that Salesi and I
decided that we both felt like if the tests showed surgery was an option for Nami,
we would do it. We both felt like that was a good decision. As I tried to sleep
that night, panic set in. There was so much pressure on my chest. I couldn’t
breathe. I told myself, “You just have to work one day this week. You can get
through this.” I talked myself into going to work after a sleepless night. The
pressure and difficulty breathing continued at school (I teach). I tried to
hide my discomfort from my students while I barely made it through the lessons.
It took every ounce of my will to stay sitting upright on my stool. I didn’t dare
move an inch. Throughout the day I calmly explained to each class that we would
be doing brain testing for my son that week and that I’d be out for a few days.
I asked if they would be patient with me while going through this process. I have
the BEST students! They have been patient, mature, thoughtful, hard-working and
SO MUCH FUN!

I made it through the first three of four classes and
despite feeling like I was going to explode, the lessons seemed to go well. Lunch
is after 3rd period and at that time I went to my friend in the front office and
collapsed. I couldn’t breathe. I couldn’t walk. I just sat hunched over on her floor
and cried and cried and cried. She told me she was taking me right home. My
irrational self said, “No, I have to teach one more period.” She said, “No, you
are going home right now.” The front office staff scrambled and found a way to
help me out with my 4th period class. Miraculously, my sister called
me at that moment and I just sobbed incomprehensibly to her. She said she was
on her way to get me. She picked me up at the school and took me home. I spent the next few hours lying
in the fetal position on my bed. I was in so much pain. My head was pulsing, I
couldn’t breathe and I couldn’t move. I took a sleeping pill, a sumatriptan for
my headache, and anything else I thought might help. It took me 4 days and a
lot of medicine before I felt I had recovered. Three of those days were spent
in the hospital with Nami. I watched as the doctors made him seize, just
enough, so they could detect if there was a “hot spot” where most the seizure
activity was coming from. I’m sure going through that impacted the length of my
recovery.

The panic attacks have continued, but none as severe as the
first one. After the first one I quickly got in to see one of my new doctors and he helped me
manage my new condition. Over the past decade, I have had to shed my belief
that taking medicine makes you weak. After this experience I was beyond worrying
about any negative stigmas attached to certain medications and I went full
force into trying to get through this. For now, medicine is helping me
function. It’s weird, because I remember times when I was growing up when I
thought, “How can someone lose complete control of their body?” Although I grew
more empathetic in my late teen and adult years, I had never experienced
anything that would make me really know what it was like. Well, now I know. I
am learning to breathe through the next day, sometimes hour, or even minute.
Sometimes that’s all I can do to get through.

7 comments:

Your strength is amazing. Keeping you and family in my prayers, you especially. I am glad that you were able to get some medicine to help you function. It is amazing how our bodies can just decide one day that they don't want to move or that they are going to stop breathing.

Oh course you have another stellar batch of students!! Pleasant Grove does a fine job of getting their kids to the that point of being thoughtful, humble and caring kids.

Because I come from a very long line of depression and anxiety, I understand all too well that it's no more valid to call that weak than it is to call someone who's succumbed to chemotherapy weak for treating their tumor. There is no difference in medicating a child with unrelenting seizures. No one wants to be medicated. It usually happens as the lesser of two evils. Please remember that as you continue down this path, because it's a long one.

Nami is going to be fine. He will. You need to watch and care for yourself and your family during this.

If brain surgery is indicated, run, don't walk. It could be the one thing that gives your sweet boy a chance at a better life - one without seizures wrecking havoc on his brain.

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About Me

I’ve finally decided to put it out there…cathartic for me and possibly helpful to someone else. I have often felt the urge to share our stories but feared being vulnerable. The experiences I share in my blog have had a profound effect on my life and made me who I am today. Even though I never thought I would write a blog (my writing skills are not that great, I use too many of these “!” and these “…”), I feel compelled to try, even if it is only useful to me and possibly my family.